Tuesday, November 25, 2003

Here is some good news for a change.

I get emails telling me that there are stories about Fanconi anemia in newspapers. This is left over from when you were alive and I wanted to know everything I could about your disease so we could beat it.

I like reading nice things like this. I hope Anthony's transplant goes well.

Transplant donor found for Clovis boy

Tuesday, November 25, 2003

A 5-year-old Clovis boy who needs a bone-marrow transplant is one step closer to having the procedure.
The parents of Anthony Arroyo heard Friday that a transplant donor had been located.

"It's a six out of six -- perfect match," said Anthony's father, Ronald Arroyo.

Marrow donors must share six molecular markers, or antigens, with the patient for a perfect match.

Anthony has Fanconi anemia, a genetic disorder that attacks the bone marrow. Doctors told the Arroyos in May that Anthony would need a transplant within three to six months.

The Arroyos got the good news just hours before a bone-marrow donor registration drive on Saturday in Fresno. No one in the Arroyo family was a perfect match, and because Anthony is Hispanic, the Arroyos knew it could be a challenge finding an unrelated donor. Minorities are under-represented on the National Marrow Donor Program registry.

A total of 229 people participated in the bone-marrow donor registration, Ronald Arroyo said. "We have our [donor], but we wanted to do it anyway to help other people. Hopefully, somebody else will find a match."

The Arroyos are waiting for the donor to meet with officials at Lucille Packard Children's Hospital in Palo Alto, where the transplant will take place.

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As you may know, November is National Marrow Donor Awareness Month. I was fortunate enough to be able to produce some Public Service Announcements through my work to encourage people to sign up for the Registry. If you go to http://www.marrowpsa.org you will find these PSAs. If you have time, email the http://www.marrowpsa.org URL to the General Managers of your local radio stations and ask them to play the PSAs. You can find contact information easily for most radio stations online on their websites. If you don't know their URL you can Google them or search through Yahoo.

The Quincy Jones PSAs are good year-round and they are targeted at signing up black and African American donors. The NASCAR PSAs are for Marrow Awareness Month.

Anthony Arroyo, 5, rocks back and forth on black cowboy boots, the heels landing perilously close to his younger sister Annalyza's bare toes. Juanita Arroyo admonishes her son to be careful, and Anthony scoots off to watch cartoons, with 3-year-old Annalyza running after him.

Anthony is never in one place longer than a minute, which is why his parents didn't expect what doctors told them in May: Anthony would need a bone-marrow transplant within three to six months.

Juanita and Ronald Arroyo of Clovis knew Anthony would someday need a transplant, but they had hoped their son would remain healthy longer. Anthony has Fanconi anemia, a genetic disorder that attacks the bone marrow.

Because Anthony is Hispanic, the Arroyos know it will be harder to find a non-relative donor. Minorities are underrepresented on the National Marrow Donor Program registry.

Anthony almost certainly will need a Hispanic donor. Marrow donors must share six molecular markers, or antigens, with the patient to be a perfect match.

The Arroyos' relatives and friends are holding a bone-marrow donor registration drive today at a Fresno elementary school, hoping to find a suitable match for the boy.

Doctors diagnosed Anthony two years ago. They suspected the boy had the rare disorder because of his thumbs: small, spongelike appendages, about the size of almonds. Birth defects, including small or absent thumbs, are tip-offs to the condition.

Children with Fanconi anemia are at risk for leukemia and other cancers. They often show signs of the disorder -- fatigue, frequent infections -- between the ages of 3 and 12.

But the only clue that Anthony's bone marrow was failing: monthly blood tests that showed a steady decline in the production of healthy blood cells. Marrow produces red and white blood cells, platelets and other blood products.

A bone-marrow biopsy in May confirmed the Arroyos' worst fears. Anthony's bone marrow was shutting down.

A bone-marrow transplant is the only option, Juanita Arroyo says.

The Arroyos are ready. They just need a donor.

They have visited Lucille Packard Children's Hospital in Palo Alto, where the transplant will be done. They took Anthony out of kindergarten at Our Lady of Perpetual Help school in Clovis so he would not be exposed to viruses and be too sick for a transplant.

Ronald Arroyo, a supervisor at Lyons Magnus, is ready to spend three to four months with his son at the hospital and while he recovers. Juanita Arroyo, a state employee, also will be by Anthony's side.

The concern is that a perfect bone-marrow match will be elusive.

No one in Anthony's family is a suitable genetic match.

But one of Anthony's uncles, Mike Torres, learned this week he could be a match for a 2-year-old Sacramento boy with leukemia who needs a bone-marrow transplant.

And a family friend, Rhonda Capriolgio of Fresno, was a perfect match for a 31-year-old man with leukemia. She donated bone marrow in July.

Torres and Capriolgio say they would not have been in the bone-marrow registry except for Anthony's need of a transplant.

"I'm glad I'm a match for somebody," Torres says. "We had hoped it would be Anthony, being he's my nephew, but there are other people out there in the same situation as my sister and her family."

Capriolgio, who is Hispanic, says she would donate marrow again. "It's definitely an emotional commitment, but you feel good about it afterward and it's worthwhile."

The Arroyos say they want Hispanics to be tested for the registry, but they wish people of all races to join the bone-marrow donor drive. Fanconi anemia can occur in any racial or ethnic group.

The Arroyos continue to hope someone already in the registry will be a match. A search of the registry began last month.

Two years ago, the Arroyos' family and friends hosted a bone-marrow drive that drew 369 people. The idea was to have someone in the registry should Anthony need a transplant. But there was no guarantee that a match would be found from this group of potential donors.

The Arroyos considered trying umbilical-cord blood for a bone-marrow transplant. The couple tried test-tube technology last year to genetically select a healthy embryo with a bone-marrow match for Anthony. But Juanita did not become pregnant.

Juanita was seven months pregnant with Annalyza when Anthony's condition was diagnosed. Annalyza is healthy, but not a genetic donor match for her brother.

The focus now is on finding a bone-marrow donor and keeping Anthony healthy for a transplant.

"You could never get ready for something like this," Juanita Arroyo says. "But we know we have no options."